Living with vulvodynia: can I enjoy a healthy sex life?

Vulvodynia is something that many people have not heard of, but if you have the condition, the chances are that it may be having an impact on your life. For women with vulvodynia, even the gentlest touch in their genital (vulval) area can result in intense, burning pain. The cause of vulvodynia are not fully understood because when women with vulvodynia are examined there are no obvious abnormalities seen.

However, there are a number of theories as to what causes the pain. The main theory is that vulvodynia is caused by irritation or hypersensitivity of the nerve fibres that run through the skin of the vulva. This can result in pain, ranging from mild discomfort to severe pain.

Diagnosing vulvodynia

As already discussed, vulvodynia can be difficult to diagnose. As a result, some women may face several years of symptoms and pain before receiving the right diagnosis. If you have been diagnosed with vulvodynia, it may well be that if a delay occurred before diagnosis, and therefore receiving suitable treatments, you may have suffered in silence for quite a while.

To make diagnosis harder, there are a number of other medical problems that can be incorrectly confused with vulvodynia, even though they are caused by something different. For example, chronic pelvic infections (pelvic inflammatory disease or thrush), skin conditions such as lichen planus, or changes in the skin following the menopause (atrophy) may all be incorrectly labelled as vulvodynia.1

For this reason, before you receive a diagnosis of vulvodynia, it is important that you are examined by your doctor to rule out other possible diagnoses first.

Living with vulvodynia

Vulvodynia is classed as a chronic pain condition, but like other long term pain conditions you can have good and bad days. Vulvodynia can vary from a mild discomfort to severe pain. Most women learn to manage their symptoms, and in time the condition can resolve for some women.

Experiencing chronic pain can understandably affect your behaviour, activities and relationships. In particular, it may affect your sex drive or cause you to feel depressed. If you feel low in mood or depressed, please make sure you see your doctor or counsellor if you have one.

Pain in the genital area especially is often difficult to talk about with family or friends, so you may be feeling isolated, which makes the problem feel even worse. If you don’t feel you can talk to your partner or friends, please talk to your doctor. Organisations such as the Vulval Pain Society give good information and also signpost to a number of support groups that are available.

Having sex with vulvodynia

When even the slightest touch can result in a deep burning or stabbing pain, it is understandable why women with vulvodynia can sometimes struggle to enjoy sex, or prefer to avoid it entirely. Here are a few suggestions on how to make things easier. Above all be honest and talk to your partner, as if they understand it will help remove some of the emotional pressures you feel, and probably make you feel more in the mood for being intimate too.

If you struggle to have sex for a while due to pain, there are, of course, plenty of other things you can enjoy with your partner without having intercourse. For example, kissing, caressing, whole body touching, massage, or oral sex.

There are some things you can try to make having penetrative sex easier. Make sure you have plenty of foreplay, find a safe lubricant that you find does not irritate you, and use plenty. Some specialists may recommend the use of a local anaesthetic gel, but please only do this on medical advice. If you use this, make sure your partner wears a condom otherwise local anaesthetic gel will leave them feeling rather numb too!

Depending on the exact location on your vulva that your vulvodynia occurs, different sexual positions may be more comfortable than others. Most women find that positions with penetration from behind, such as spooning or doggy style, are more comfortable, as these positions usually avoid their most sensitive places. However, the best thing to do is obviously to experiment and find what you are most comfortable with.

Some experts recommend continuing to have regular sex if you can. When you don’t have intercourse for a while, you may become tense and develop involuntary spasms of the vaginal wall (vaginismus), making things even more uncomfortable. However, regular sex may simply be not be possible for you, so don’t panic if this is the case.

Other options include the use of special vaginal dilators to help relax your vaginal muscles. These start off small and come in different sizes so you can gradually increase what you feel comfortable with. Many women find this useful before intercourse to make penetration more comfortable.

Remember that although vulvodynia is classed as a chronic problem, many women find that their symptoms improve over time or they find treatments make the condition more manageable, meaning that sexual activity becomes increasingly pleasurable again.

What treatments can be helpful for vulvodynia?

Vulvodynia can be a difficult condition to treat, but there are a number of therapies that can be tried. Most women will try localised treatments first. These include using soap substitutes when washing (such as aqueous cream), and applying topical local anaesthetic gels or cooling packs in the location you are experiencing pain. Some women also use Tens machines with good effect.2

Relaxation exercises, cognitive behavioural therapy (CBT) and counselling can be very helpful for some women. They do not remove the discomfort, however, but they do make you better at managing it.3

If the methods already mentioned do not help, don’t worry, there are a number of other options to try as well. Simple painkillers such as paracetamol are generally not so effective for vulvodynia, but are worth trying initially before you move on to trying other medications.

If you have no success with over the counter painkillers, your doctor may prescribe you a specific medication that targets nerve pain (neuropathic pain), for example amitriptyline or gabapentin. These medications can be extremely effective, but it takes time for the effect to build up. Usually this is over a few weeks to reach their maximal effect.

The downside of these medications is that some women experience side effects taking them, such as feeling sleepy, having blurred vision or becoming constipated. Symptoms do usually settle over time but please do talk to your doctor if they are troublesome.4

Above all please remember you are not alone and make sure you talk to your partner about how you are feeling.

Many women are able to continue to have a good sexual relationships whilst suffering from vulvodynia, but if you are unable to, remember there are many other intimate things that you and your partner can still enjoy until things feel more comfortable again.

Jennifer is a General Practitioner, medical writer, parent, and founder of the Grace Kelly Ladybird Trust, registered charity for childhood cancer awareness and research (www.gracekellyladybird.co.uk). She also has a particular interest in women’s and children’s health, and enjoys medical writing, particularly helping make medical information easily accessible to those who want to find out more.